Needing a surgeon for RC

Thanks Pat on the suggestions. It would be very hard to travel so far away. Are there any surgeons closer, say in Kansas City or Iowa?

Jillo,

I will add that when I was looking at which diversion to choose, I talked to a wonderful doctor who did neo's for both guys and gals and he told me I could expect to cath if I got a neo...talked to a couple of his female patients and they both were cathing on a regular basis. They probably didn't know about the Indy and felt the neo was better than the bag.

In regard to the after effects of an RC...
I'm thinking for women, that no matter what the diversion, sex is less than it was prior to surgery. I had a hysto. in my late 30's but sex was still OK until I had the RC at age 57; they took the ovaries and that pushed my menopause into overdrive; intercourse is still doable but not pleasant due to the extreme dryness, etc. Still there are other ways to express pleasure so we enjoy what we can.

Hello Jillo,

I was 38 when I had my Radical Cystectomy. I was briefly told about an Indiana, but was told that due to my age I should opt for something more successful the neo-bladder. Being a young vain women I opted for the neo-bladder because I wanted to be normal after.

I am one of the 30% of women that is incontinent after a neo-bladder. I am 2 years out from surgery and despite all the exercises my incontinence is worse. I am in diapers at night and most of the day.

I have talked to many women that had great success with their neo-bladder and I am happy for them. If I had to do it over again I would opt for the Indiana.

Most doctors are concerned with the here and now and do not have to live in your future. This is the time to ask them about the quality of life issues. How many women have they performed surgery on? What complications are there with the diversion? What are the affects the surgery will have on your sex life? Being male they do not think of these things. Public restrooms are an absolute nightmare for me. I would much rather be able to stand and catheterize. I have changed wardrobe styles to hide the bulk of diapers. Intimacy is still the most difficult hurdle for me and my husband.

I do not want to scare you, I just wanted to give you insight from a neo that does not work as advertised. Whatever your decision the people here are always ready to help and listen.

Wishing you the best,

Webs

I'm a male with a neobladder but I have been doing lots of reading and research in the past few years about various diversions. I can say without a doubt that if I was female I would have opted for the Indiana Pouch.

While there are successful neobladders for women, the probabilities of problems are just too high and those problems can lead to complications long term. Just doesn't seem worth the risk.

I have to catheterize myself every time I go. If I was female, that would mean a much higher risk of infection and it's not as easy to do the catheter for a female as it is a male.

Good luck with your surgery!

Mike

Jillo,

I got my Indy Pouch almost three years ago; I tried to read everything Pat wrote in regard to her experiences with the Indy and of course I compared that info. to what I read about the neo and the bag. Being a 56 year old female who wanted very much to be able to return to work, I decided I wanted the Indy Pouch.

In fact, my surgeon would not even consider doing a neo bladder for me...for the same reasons Pat has listed in her posting...my doctor said he didn't feel it was fair to give any woman a diversion which results in a rate of 40% incontinence. For me, it was a 7 hour surgery, 10 day stay in the hospital, a month before I felt confidant enough to go outside my home for a social event, took me several months to get the bladder trained so I felt good enough about returning to my job...by the time six months had passed I could say I love my Indy pouch. Not everyone's experience is the same; we all have different backgrounds, different health histories, different attitudes, different doctors and medical teams...and age is another factor. What works for one, may not work for another.

I encourage you to check out my website, link below my name, to learn more about my views of the Indy Pouch and sides issues related to the cancer experience. Remember, you are the one who has to live with the results so you want to make the very best decision for you. The surgeons are primarily interested in surgery and not all that concerned about how life will be for you after you leave the hospital. Do not expect the doctors to tell you everything you need to know, because it simply doesn't happen. Ask lots of questions here on the forum; those who have traveled that road thru surgery and recovery and better tell you what to expect.

Jillo..cannot compare male neobladder to success rates in female neobladders.......there is no comparison. Men have a longer urethra so better outcomes but even if they don't want to admit it they generally have to cath at some point. A bit easier for a guy to cath...got a better eye for the target as we do not. One of the problems with females is we have lost all support down there...no uterus...nada...it prolapses thus it doesn't empty properly and there is no valve to keep it from backing up into the kidneys and causing UTI's. The surgeons won't recommend it because very simply they don't know how to do it....and besides they're usually men and its a manly thing to pee with your penis. True rates are not published out there on females and neo's....at best its a 33% success rate and i'll bet Dr. Koch has all of them. I've had an Indiana for 7 l/2 yrs now with a naval stoma...no bulges anywhere so its not obvious at all....i have it trained to go every 4 to 6 hrs during the day and i sleep all night......i'll put those stats up with anyone with a neo!
The surgeons who do know how to do the Indiana will come right out and tell you that its the best conversion for a female and they know how to do all 3 conversions. Shame on Mayo.....they're wrong.

Most investigators have reported on a single type of diversion. Over the years, Santucci et al. [8•] have suggested that a variety of configurations might be appropriate and therefore have constructed five different continent urinary reservoirs when required. They reported long-term continence rates and compared urodynamic results in a series in which the senior surgeons performed a variety of different continent urinary reconstructions [8•]. Stomal urinary reservoirs had the best continence rates (Indiana pouch 100%, Mainz pouch 91%). Neobladder continence rates were as follows: Hautmann 80%; Mainz 75%; sigmoid 50%; and gastric 33%. Compared with the other pouches, gastric and sigmoid reconstructions had the smallest capacity, were the least compliant and were the most contractile. Stomal urinary reservoirs using ileocecal valve and right colon, with or without an overlying patch of ileum, provided similar excellent results. Continence approached 100% in compliant patients without the need for revision. Patients with neobladders were less continent, although those with ileal or ileocecal configurations still had very good continence rates. Neobladders of sigmoid or stomach can be used when necessary, but with greater incontinence rates. This poorer continence can be explained by the decreased capacity, decreased compliance and a tendency toward high pressure spikes despite detubularization"
pt.wkhealth.com/pt/re/merck/fulltext.00042307-200005000-00005.htm;jsessionid=LhgXKhzH9T3pyLhVZjpL6vRZHXJ0JZ2vgb15n9jC73sWs73WSZp0!-761347985!181195628!8091!-1
pat